So, I’m almost done here. All in all, I can say that the whole thing has not really brought me anything. If, then so much that I speak here more, get up earlier and eat regularly. Because of the pandemic, some activities were cancelled, such as swimming and singing. I am not angry at all about singing, swimming I find a pity, I am not allowed to use the swimming pool unattended. The stuff are all friendly and helpful, but it’s primarily a Parkinson’s clinic and everyone assumes it’s about Parkinson’s in my case, doctors and therapists. But a pure MSA clinic does not exist – at least not that I know of. The MSA patients who respond to Parkinson’s medications are lucky here. Our disease , also called “Atypical Parkinson’s” is the closest to PD. The doctors here at least know about us, that’s something, but they can’t help us either. What is a bit annoying is to explain to all, patients as well as therapists, that I don’t have Parkinson’s and what multisystem atrophy actually is. I then say imagine Parinson’s and ALS have a child, or it is like Parkinson’s only much faster, with more symptoms and fatal.
Dopamine was tried again, still does nothing, so it is discontinued again. Because of the low blood pressure I get something that I am not like bird poop in the air, especially in the morning. And I get another medicine (I don’t want to mention the name here) which my neurologist actually advised against. Whether this is good or bad for me, I don’t know. One learns: Doctors have actually also no clue.
I would actually like to have more applications here, but the therapy here is more about optimizing medication, not about movement and activity. However, the individual physiotherapy sessions were good and useful and I learned something new. They were just too short. At home I actually do more and have a program with my therapists that is tailored to my needs. I also do more on my own, while here I am just waiting for the next program point.
For patients with health insurance there are double rooms, single rooms are available if you pay extra. Double rooms are not so good for MSA patients, they can be disturbed by the room neighbor at night and we know what bad sleep means the next day. Just so you can disturb the room neighbor yourself, many MSA patients are restless in their sleep and make loud noises which can disturb the other person. I was lucky that over the holidays the clinic was not very busy, I was alone in the room most of the time. I also find such periods better, by the fact that there are few patients there, everyone has more time for and attention to one. From what I have experienced, here in the summer is fully occupied and very busy.
Double rooms for patients with companions practical. Over the holidays had also been many couples here. In general, caregiver are common here. So patient on referral slip, the caregiver at his own expense. Visitors are not allowed at pandemic times, there are strict requirements and weekly tests, which I think is good. However, mail can be sent here, some have received their Christmas gifts here by mail. You can leave the house, the countryside is very beautiful, you can go for walks and shopping is also nearby.
Speaking of patients with accompaniment. I have often observed here how lovingly partners take care of their spouses. Sometimes they are a bit frustrated “Herbert, why don’t you do this and that” – which is understandable. I was torn all the time and could not decide what is better, to be alone or in company. Because sometimes I also wish there was someone there to pick up things I dropped, pack my suitcase, make my bed or cut my schnitzel into bite-sized pieces. But I still have a request to companions, partners and caregivers; even if you feel sorry for your protégé again and many things often look like torture, let him or her do it, let him or her pick up dropped things, fetch something or cut their food – even if the mess is pre-programmed, this is all exercise, activity and movement. Patients often do things wrong, perform things incorrectly. It doesn’t matter! The main thing is that they do it. You can lovingly correct them and help even if it sometimes doesn’t work perfect. Do not lose patience! Unfortunately, I have often seen that the patient loses courage and ambition, which is understandable, and simply lets himself be served freely according to the motto “I can’t do that anyway”. So you lose your skills faster.
In any case, I’m looking forward to my four walls now, I’m starting to pack, that can take a while with me.